This is a wonderful article and a pleasure to read. The author, Carlyn Zwarenstein, puts into words what it’s like to live with chronic pain and how opioids allow her to have a life that ankylosing spondylitis would steal from her.
I’ve only skimmed some excerpts from what is a thorough and clear-headed article:
Let’s Have a Cautious but Compassionate Approach to Opioid Prescribing A patient’s perspective on living with chronic pain in the midst of an opioids crisis – 4/4/18 – by Carlyn Zwarenstein
Today I went on a drug-fuelled hiking trip with my twelve year old son. He wasn’t on drugs, of course. I was.
I spent much of my two kids’ childhoods in a haze of pain due to ankylosing spondylitis (AS) and, sometimes, the NSAIDs that are the first-line pharmaceutical treatment for it
In AS, inflammation erodes the ends of the vertebrae, which, like irritated oysters, then deposit bone in the spaces between them
It’s a chronic, degenerative and variable disease.
This is true of my EDS as well.
Still, the cornerstone treatments are lifestyle-based, focusing on the vital role of exercise and lying flat to ensure that if fusion occurs, I end up frozen in a straight rather than a bent-over position.
I pace the waiting room, walking in circles and stopping frequently to stretch: hamstring, quads, that intensely tight, ropy sternocleidomastoid.
AS is fundamentally a disease of pain, one that starts during one’s most productive and responsibility-laden years.
I would say the same about my EDS.
As with other long-term pain conditions, the experience of pain deeply colours every aspect of the sufferer’s life.
It is hard to adequately express just how dramatic this is.
Yes, hard to express, but very common to feel. Our lives feel upended or even destroyed.
Undiminished pain inevitably affects other aspects of mental and physical health that the physician is then called upon to deal with. Inadequately treated pain exacerbates existing poor social determinants of health as well as quickly thrusting the pain patient and their family into poverty and its vicious circle of health effects.
If I want to sit at all in that waiting room, (or if I want to enjoy a cold spring walk in the forest with my son) I now take a low dose of a synthetic opioid first. The drug eases pain so that normal life is in my grasp again.
Under its influence, I can carry out the long, monotonous daily regimen of stretching that relieves stiffness and maintains my range of motion.
Doctors used to prescribe patients opioids so that they *could* do the exercises that help them. Without opioids, physical activity would be too painful, which keeps them bed-bound, which causes more physical deterioration and more pain…
It enables me to sit to write this essay, and to take a car or a plane ride, things previously impossible for me.
This is the irony: to write this, we have to take “drugs”. Our “drug-free” life would be horizontal in bed.
opioids now allow me to have something that resembles a normal life despite an unpleasant degenerative disease, to earn a semblance of a living, and to manage parenting.
The reason I use an opioid…
Here it’s worth reading the whole article just to see that long list of “treatments” that caused her all kinds of misery.
I could avoid opioids by spending my day in an extremely hot bath, but I am just forty years old and a single parent and I unfortunately can’t spend my day in the bathtub.
Every treatment for my condition includes death as a possible side effect and comes with little or no evidence relating to either long term effectiveness or long term harms.
It’s not just opioids don’t have evidence to back their effectiveness – none of the CDC-suggested “treatments” do either.
A low, effective dose of an opioid is the most sensible, and merciful, option for me, for now.
When not being a human guinea pig, I earn my living writing about evidence for both lay audiences and medical professionals. I’ve read and spent a lot of time understanding the various guidelines around opioid prescribing and the evidence they’re based on.
The Opioid Wisely recommendations are generated by eleven different organizations
The recommendations are based on an evolving understanding that the role of opioids in pain care (whether acute or chronic) needs to be more cautious.
The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain (or McMaster Pain guideline) is the key document guiding this consensus in Canada.
It was explicitly drafted to respond to concerns about the high relative rate of opioid prescribing among Canadians (we’re second to the US in legal opioid use per capita).
It doesn’t specify what would be a reasonable rate.
Thank goodness for that!
If it had mentioned any numbers, policymakers would have grabbed hold of them and used them for standard dose limits like they have in the U.S.
This guideline seeks to minimize the risk and harms and maximize the benefits of any opioid prescribed specifically for chronic pain
Weren’t doctors doing this all along? Don’t they usually document the symptoms, like high blood pressure or high cholesterol, for which they are giving medication?
The Canadian pain guideline closely but not completely follows the game-changing 2016 Centers for Disease Control (CDC) guidelines from the US, which have dramatically changed the landscape for opioid prescribing south of the border.
This guideline gave doctors what policymakers wanted all along: numbers. What they hear is
“keep your patients below 90MME and we’ll leave you alone,
go over 90MME and we’ll raid your office”
Informed pain patients, looking at the U.S. experience, have reason to be concerned at how an individual physician might choose to apply recommendations
Our response to the “opioid crisis” has become an international horror show, an example of what NOT to do.
To date, dozens of suicides after forced or coerced taper have been by and large ignored by restrictive prescribing advocates, although they are increasingly unnerving to other physicians.
These suicides can be attributed variously, depending on the details of the case, to a cruel and sudden taper and the shock of patient abandonment or denial of the drug, and in other cases to the loss of function and quality of life a patient may experience months after a responsibly slow and technically “successful” taper, when an adequate alternative does not exist or is not found to deal with the underlying pain condition for which the opioid was prescribed.
Decreases in morphine equivalents per capita have occurred abruptly and unevenly across the U.S., often without regard for patient safety. Over-zealous and incorrect interpretation of the guidelines by insurers and a range of governance bodies has resulted in legislation of varying maximum morphine equivalents
Meanwhile, the rates of use and fatalities from illicit opioids have risen dramatically, which may or may not be linked, but is likely at least partly the result of people with opioid use disorder moving away from prescription opioids towards more accessible, illicit alternative
CDC authors have, belatedly, begun to acknowledge that substantial numbers of overdoses attributed to painkillers were actually likely caused by illicit fentany.
This is wonderful news. The CDC didn’t announce this, they published just a hint of it in another agency’s journal, the American Journal of Public Health: see CDC Over-Counting Rx Opioid Overdose Deaths
In fact, the Canadian and CDC guidelines lean on a similar body of evidence, are similarly ultimately based on the consensus of a selection of influential experts rather than being a Cochrane-like meta-review of evidence
However, with the new Opioid Wisely recommendations, Canada continues to chart an independent, cautious but compassionate approach to maximizing pain patient well-being and minimizing harms
I remain concerned about the risk of doctors absorbing a strictly anything-but-opioids message, rather than focusing on the overall well-being of the patient in front of them.
how a similar idea has been understood by a student doctor:
“[…] it is my belief that most chronic pain patients take opioids to avoid withdrawal symptoms
Heroin addicts and patients taking chronically prescribed opioids for pain are largely physiologically equivalent-the only difference is the drug dealer”. (forums.studentdoctor.net)
It doesn’t reflect evidence, but it does reflect the words of a prominent U.S. advocate for restrictive prescribing, who says of opioid painkillers, including low-dose, oral opioids, that “they’re essentially heroin pills”
The Opioid Wisely campaign is, like the CDC guideline process, based on consensus of a selection of experts in different fields.
Most patients don’t actually like opioids.
I have noticed this too. Almost every pain patient I know of hates needing these medications.
With the opioid I take, tramadol (a drug with its own distinct risk and benefit profile that some patients nevertheless tolerate much better than other opioids), I receive significant relief from pain, with no side effects to date. This periodic relief has allowed me to reclaim a substantial part of the life that ankylosing spondylitis (and then NSAIDs) took from me.
Conversation with my doctor is important for both of us.
I’ve been able to observe that my doctor knows I am a responsible user, that he is aware of all I do to manage my own condition, and that he appreciates my values and goals and my personal tolerance for risk.
A thoughtful approach to opioid use for chronic pain will protect both individual patients’ medical needs and public health. This approach needs to include better clinician-patient conversations, which should be informed by science and patient needs, rather than fuelled by fear and the rampant stigma surrounding opioid use, even in those cases where it remains the best treatment for a particular patient who has exhausted the available alternatives.
No patient should be treated as a morphine equivalent, a prevalence statistic, an addiction risk or a lawsuit.
A new NEJM commentary proposes that physician emotional well-being, rather than patient well-being, is the prime driver of American doctors refusing to prescribe opioids even where appropriate.
Original excellent article: Let’s Have a Cautious but Compassionate Approach to Opioid Prescribing